Thursday, May 18, 2006

Something About Sarah

Well, I can't believe I'm doing this.

I think I need a place to vent, and possibly anonymous ears to listen to me.
My first post is going to be some background on my medical situation, copied and pasted from, where I sometimes hang out to get info and not feel so alone in this.

I was diagnosed with stage 3 malignant melanoma (unknown primary) at the age of 27. Malignant melanoma is the deadliest skin cancer, and the most common cause of cancer death in women age 25-30, believe it or not. Here's how it all came about:

July 2004: Have a bit of pain in right arm. Feels like "10 bees
stinging me at once" deep inside my arm. Thought I pulled something
at gym.
August 2004: Still have same occasional pain but not worried in the
least. I'm enjoying my summer and playing soccer. Have tons of
energy, working full time and going to school. Moving at end of
Early Sept 2004: I get out of shower and notice a golf-ball sized
lump under right axilla. Must have popped up virtually over night
because it was summer and I was frequently shaving so would have
noticed. I had a bad cold so I thought it was a reaction. Never
really known anyone to have cancer so I had no idea that a swollen
mass in armpit could be a big warning.
Sept 13, 2004: Went to family doctor who prescribed amoxicillin. Said
the only time she has ever seen something like that is with mono.
Since I had mono at 15 that was not a possibility. I didn't perceive
her to be concerned and I was still not concerned at all. I was so
far removed from considering that it might be cancer that I even did
an Arnold impression and said to her "As long as it's not a tooma."
She looked at me funny but didn't say anything. That moment haunts me
now... she knew it looked like a tumor. How mortifying and awkward.
One week later Sept 2004: Lump not going down. Maybe it is bigger?
Family doc says I need to consult a surgeon. It would be another week
or so before I realized that meant "surgical oncologist". Lump is
really starting to HURT and I have to be really careful with my arm
because of the nerves being pinched. My doc can't get me in with a
surgeon in London for at least a month so she says to go to
Late Sept 2004: I go to emerge and get an ultra sound of right
axilla. I'm still CLUELESS! I thought maybe at worst it was a cyst
and I'd need surgery. Doc says it is a lymphnode but they don't know
why. After a breast exam he says matter of factly "I'm pretty sure it
is not breast cancer as there is no palpable mass in the breast".
That is the first time the "C" word is mentioned and I thought it was
rude of him to be so matter of fact. He says I need to see a surgeon
for a biopsy. I'm still not concerned... I've had a few biopsies
before and they are a standard way to rule things out. As I'm leaving
the nurse says "good luck!" and that rings in my ear. She knew.
Sept. 24 2004. I finally get a biopsy scheduled after returning to
emerge for a second time with a note from my family doctor. Seems
there aren't enough surgeons in this city and the wait is infinite to
see one if you don't already have a diagnosis. So, the emergency doc
has a friend who is a radiologist and he agreed to do the needle
aspiration on the 27th as a favour to his buddy. Thank god!
Sept 27th 2004: Fine needle aspiration by Dr. Gray at South Street
campus of London Health Sciences. He hints it might be lymphoma and
says that it is highly treatable so not to worry. Also says it could
be a number of other things including "cat scratch disease". Now I
know it could be cancer. The panic sets in.
Sept 29th 2004: Dr Gray calls with results. Looks like melanoma.
His voice was very grave and sullen and I knew this was not good. I
say "that's not a good one to have" as I choke back the tears and he
says "no, it's not" and then I think he was trying to reassure me when
he added "sometimes bad things happen to good people." I took that as
a death sentence.
Early October 2004: Meet with surgical onc, Dr. Engel at the London
Regional Cancer Center. Says primary would have to be on trunk or
right arm for it to drain to right axilla. There is nothing
suspicious. Nine years earlier I had a mole removed from mid back but
path came back clear. I showed onc the path report and he said that
it would be very unlikely that it was that mole because of its
characteristics and the fact that is was 9 years earlier. I still
wonder. But it doesn't matter at this point.
October 14 2004: Surgery to remove nodes. Later found out 2 positive
nodes lumped together in an ugly mass the size of a softball. Dr.
Engel says it is better than he thought which surprised me. I didn't
realize how bad he thought it was. I have drain in for about 4 days.
I do exercises and arm heals up great. Lost all feeling in armpit and
some back of arm and breast. No biggy. Gotta be careful when I
Mid Nov 2004: Start high dose Interferon. That is the only option in
Canada besides doing nothing. I didn't research the drug, I just
trusted the onc. I was extremely fatigued most days, but somedays I
was mediocre. After 2 weeks I asked to go on Paxil because the
Interferon was making me really negative. I thought about death and
dying constantly and couldn't take it. I was teary all the time.
After a few days on Paxil, I could see the light again. Interferon
disturbed my thinking and cognitive abilities more than anything. The
"flu-like" symptoms were negligible.
Dec. 17th 2004: Highdose treatment done. I get a break from
treatment over Christmas and New Years! I felt 100% back to myself 3
days after treatment ended! I have just enough time to get my
Christmas shopping done.
Early January 2005: 6 weeks of radiation to right axilla. Tolerated
this fine. Had about 2 weeks of pain while it oozed and healed. I am
impressed with how well my skin has healed.
February 23rd 2005: Fist low dose injection. 5 hours after
injection, the symptoms start and last 8 hrs. I am in pure agony from
the body aches, chills, migraine and fever of 104. Tylenol did not
help in the least. I didn't know pain could be so painful!
February-April 15 2005: Shots are going great. Much better than I
expected. The first night was the worst by a mile. I take my shots
on Sunday, Tuesday and Thursday nights. The Tylenol prevents any pain
from creeping up. I say that somedays I'm 80% myself and somedays I'm
60% my self. I go for short walks for some exercise but definitely
could not go to the gym! The fatigue is definitely there all the time
and sometimes I just lay on the couch all day. Generally though, I
can go out and about and be almost normal. I'm off the Paxil and have
not had further depression issues. My appetite is fine and I have no
change in taste. People are surprised at how "good" I look. I won't
be playing soccer this year and I'm really sad about that! I'm not
attempting to work because I can't predict when I'm going to feel good
and when I'm not. I don't want the guilt nor he pressure of trying to
work when I feel crappy. Also, my thinking has slowed down and I am
very scatter brained and have a short attention span. I think this
break of 1.5 years from work will allow me to really get in touch with
myself. I am excited about the possibilities. I've taken up yoga and
am reading a lot of "self-help" books. I want to get my life back on
April 15 2005: I get up nerve to ask my medical oncologist a few
scary questions. I never asked about staging but figured out on my
own that I am stage 3 but because there was no primary am I 3B or 3C?
He says that he can't determine that but I am definitely not 3A which
I knew. I also asked about having children. He says I can go for it
as soon as my cycles get back to normal after INF. I have read that
many oncs don't recommended pregnancy for stage 3. Dr. Ernst believes
the literature does not show a link between pregnancy and mm
recurrence. He says I have to live my life and if it is something
that I want to do than I should. I'll wait at least 2 years I think.
Getting married on July 9th 2005 to my love of 7 years, Derek. Dr.
Ernst said no problem to take 2 week break for INF so I can enjoy the
wedding and honeymoon in Bermuda.
June/05 Developed a bit of lymphedema and brachial plexopathy in in
right arm due to radiation. Not nice, but a small price to pay for my
August/05 Transfer care to Princess Margaret hospital in Toronto (two
hrs. away) under Dr. Ian Quit and Dr. David Hogg after Dr. Ernst
leaves for Miami. I am very happy with PMH so far. They seem to have
much more money and resources and get things done much faster.
Dec/05 Decide to quit interferon at about 9/10 months. Current
studies show that INF does not increase overall survival but it may
add on average 12 mos. to your life. But, you feel like crap for 12
months too. Also, my docs feel that I likely got any benefit from the
drug early on in treatment. It is the Christmas season and I want to
feel good again. I really haven't kept track of exactly how many
shots I took but I took a 2 week break in May and a 3 week break in
July due to my wedding so I think that makes it about 9 or 10 months
that I did on INF.
Dec.22/05 LOCAL RECURRENCE detected on my own! I am shocked.
Located in what is still considered my right axillary node basin but
it is really just beneath my collar bone and 1cm out of my previous
field of radiation! Surgery is scheduled for January 19th. Wait
times are ridiculous. CT confirms no further mets. This tumour has
grown just like the previous. It went from nothing palpable to the
size of a golf-ball virtually overnight and has now increased to the
size of an apple in 3 weeks since biopsy. I would say that is fast!
On a positive note, I feel 100% back to myself post-interferon except
I have attention and memory difficulties.
Feb 20/06 Path results: 1 positive node. "Only" 5cm, so smaller
than I thought. Felt big because it was behind pec muscle. No
further treatment (there is nothing in Canada). Appointments with Onc
every 3 months, CT scans every 6 months. 80% of stage 3C melanoma patients are dead within 5 years. Fuck that.
May 18/06 Still feeling fine. Back at work last week after 1.5 years off.

Supplements I'm taking: Modified Citrus Pectin, Green Tea Extract,
Turmeric. Crossing fingers and pleading with the universe. This was not suppose to happen.